An illustrated history of our hospice
Every hour of every day
‌ since 1986 Suggested donation £5
With thanks to... This booklet has been made possible by the hard work of many volunteers. Heartfelt thanks are due to the St John’s Hospice Archive Group – David Galbraith, Brenda Flanagan, Janie Kirkman, Jean Lawrence, Barbara Mullholland, Michael Siney and Mike Warren. Thanks also to Robin Pritchard of Design & Image for the design, Pete Walker of Parkside Computers for the aerial photography and Lois Sparling and Lucy Rogers for the writing and editing.
Who we are St John’s Hospice is a local charity which provides free palliative care to patients with life shortening conditions. Our services cover a population area of 250,000 people in North Lancashire, South Lakes and parts of North Yorkshire. Grasmere Ambleside
Windermere
Sedbergh
Kendal
Dent
Milnthorpe
Kirkby Lonsdale
Arnside Silverdale
Ingleton Carnforth Morecambe
Hornby
Lancaster
Heysham
Settle
Garstang
Find out more
St John’s Hospice Slyne Road, Lancaster LA2 6ST Tel 01524 382538 www.sjhospice.org.uk SJHOSPICE @SJHOSPICE St John’s Hospice North Lancashire and South Lakes is a charitable incorporated organisation registered in England with charity number 1157030.
By the people, for the people St John’s Hospice has been part of our community for 30 years. Every second of every day and night since 1986 the team at St John’s have been alongside local people when they have needed us most. I hope we can continue to do this for the next 30 years. Our aim is to ensure that, on each patient’s journey towards the end of life, we provide the right care, in the right place, at the right time. As you can see from this publication, St John’s Hospice has always been ‘by the people, for the people’. Without a huge fundraising effort in the early 1980s the hospice building could never have opened and today fundraising, legacies and income from our shops cover two thirds of our considerable operating costs. We could not serve this community as we do without the dedicated work of all our volunteer fundraisers – the local ‘Friends’ groups who shake the tins and staff the stalls and hold the garden parties, the individuals who take part in sponsored events, the local businesses who pitch in time and sponsorship. And we certainly couldn’t function without our amazing team of volunteers – on reception, in the gardens, in the shops, on the ward and on the Board – supporting us tirelessly in every aspect of our work. The volunteers who have worked on this publication have tried to capture key events and images from our 30-year history. Clearly we cannot mention everyone who has been involved along the way, but we hope you enjoy the selections they have made. Thank you for your ongoing support.
Sue McGraw Chief Executive
How it all began This year we are celebrating 30 years of providing a wide range of care and support to the residents of North Lancashire and the South Lakes, but the official opening of our brand new hospice building, on 8 January 1986, isn’t really where the story begins. A lot of discussions and a lot of hard fundraising work had already taken place.
M
any of our current staff and volunteers remember the original St John of God Hospital (now Hazlewood Hall) at Silverdale where the first patient with inoperable cancer was accepted for palliative care in 1971. With the blessing of the senior sister, sister John, and her colleagues of the order of Our Lady of Apostles, palliative care at the hospital grew during the 1970s and gradually, with the arrival of sister Callistus to lead the nursing element of the work, took over eight orthopaedic beds as techniques required shorter postoperative hospital stays for other patients. Sister Callistus was joined shortly afterwards by sister Aine Cox who came as matron. Recognising the relevance of the work which we were doing and being a charismatic and influential individual, she developed relationships with several senior medical and other NHS staff, alongside banking, property and legal colleagues who had started to take an interest in the idea of a hospice service for our area. In 1976, a group of such people met to form a Committee to look at the possibility of establishing a dedicated hospice – in Silverdale, Arnside or elsewhere. By 1980 an agreement had been struck between the Area Health Authority and the sisters that the Order would provide the nursing care required if premises could be built. In the same year, a new Board of Trustees was established, under the chairmanship of Tony Mason-Hornby, a Patron found in the person of the Duke of Westminster, a charity registered and the challenging matter of raising £1,600,000 (later rising to £1,900,000) embarked upon. Anne, Duchess of Norfolk, accepts a bouquet at the opening ceremony in January 1986
Mayor Bill Mashiter and his wife look on with Sister Aine as Dr McIllmurray cuts the first sod at the new site
Brick by brick Following the public meeting at Lancaster Town Hall, four support groups were set up – in Lancaster, Morecambe, Silverdale and Garstang. Each group worked hard for four years raising money to help build the hospice and other groups sprung up over the years in Bolton-le-Sands, Burton, Kendal, Grange and Barrow among others.
Summiting a second Everest When the first sod was cut on the site of the old Beaumont Hospital on Slyne Road on 5 June 1984, Sister Aine remembered with affection the ‘high hopes, courage and determination’ with which the appeal had been launched to a crowded room at Lancaster Town Hall on 1 October 1981. The intervening period had not been an easy one, encountering ‘every conceivable problem and block’ – Sister Aine compared it with the recent conquest of Everest – but through the efforts of the Trustees and the many support groups, helpers and subscribers across the area enough of the final target sum of £1,900,000 was raised to commission a 28-bed facility, in two halves, one for cancer patients and one for respite care for chronic illness. The design was intended to reflect buildings in Nigeria, where Sister Aine had worked for 28 years as a missionary.
One of the big fundraisers was a Grand Charity Ball hosted by the Trust’s Patron, The Duke of Westminsters at Ashton Hall on 26 February 1982, which merited a whole page in Lancashire Life.
Just over a year later, on 23 July 1985, Sister Aine was climbing the roof (in sandals and without a hard hat!) for the ‘Topping Out’ ceremony and the building was completed and handed over on 16 September 1985. The first five patients were admitted in December of that year, and Anne, Duchess of Norfolk, was the guest of honour at the official opening of the hospice a month later – on 8 January 1986 – in Sister Aine’s words ‘a memorable and very happy occasion’.
Board Chairman Tony Mason-Hornby and Mrs Mitchell-Barker talking to the Duke and Duchess of Westminster at the ball
At many of the events people were invited to ‘buy a brick’ for 50p and got a little metal badge to show that they’d done it. Hundreds of thousands were sold and they became a common sight around Lancaster. There were also physical bricks donated for the fabric of the building. These came from local barns and outbuildings and were used in the walls of the chapel, which is why the bricks are all shapes, sizes and colours. Sisters and Trustees at the official opening with the Duchess. Sister Aine is third from the left, with Sister Callistus to her right.
We will never be able to thank you enough for making our Mum and Nanna smile .
The changing context for clinical care disease. However it will have side effects. Patients often want to talk this through with our nursing staff, to help them decide what they want to do.
Changing care needs
Maddy Bass, Head of Nursing and Quality, reflects on some of the challenges of a career in hospice nursing in the 21st century. Nursing is a profession and a vocation, something a person needs to be passionate about to pursue as a career. Since the days of Florence Nightingale, nursing has been about care, standards and compassion. That’s one thing that we hope will never change, particularly in hospice care. But over the past few decades there have been many, many things that have changed in nursing – changes to how healthcare is managed and how staff are trained for their evolving roles and responsibilities.
We have amazing teams of registered nurses and health care assistants in our ward, Hospice at Home and Day Hospice teams. Here are a few of the changes we have taken in our stride over the past 30 years.
Patient choice In the past, doctors often made decisions that were not discussed with patients, such as telling relatives that a patient had cancer before telling the patient. Today we would always discuss a patient’s condition with them first, unless they have specifically told us that they would prefer not to know. Patients who can make choices must be given the chance to do so. This is enshrined in the Mental Capacity Act. Only if they don’t want to do so, can the decision be left with the family or carer.
Today, patients’ care needs are more complex: as we live longer, we develop long-term conditions, such as diabetes, glaucoma, or arthritis. This means that caring for someone with a palliative illness will almost always include caring for these conditions, too. Palliative patients are now also living with their disease for much longer, which means we are supporting side effects and symptoms which we previously were unaware of. Side effects and the need for more help and equipment increase as a patient gets weaker. Hospice and palliative care is no longer just about cancer. Thirty years ago, almost all our patients were cancer patients (although in the beginning we did offer respite care for other conditions). Now we see almost as much non-cancer as cancer. We can support people with neurological diseases such as Motor Neurone Disease, COPD and Parkinson’s, as well as advanced heart failure and many others. This means our staff need a broad set of skills and knowledge to adapt care safely for a multitude of conditions.
More generally, thanks to the internet, people know their rights and their options much more now. They can research their own symptoms and conditions, too. As professionals we need to be even better informed to be ready to answer their questions and offer support. There are also ethical dilemmas our nurses now need to deal with that didn’t exist before recent technical advances. For instance, many patients are offered palliative treatments such as chemotherapy for cancer which will not cure but may help to control the Palliative care is now a specialist area in its own right. Thirty years ago, specialist palliative care nurses were just coming into post, but they did not have the knowledge and complex skills that we have today, nor the same range of roles and jobs.
(L to R): Sisters Aine, Callistus and Maureen – passionate about palliative care
We can support people to die at home now: 30 years ago this was rare, and death occurred much more in hospitals. Now we are able to support patients and families who would like to be at home. In North Lancashire & South Lakes, we have one of the highest rates of people with a palliative illness dying in their own homes in the country. We are proud of this and will do all we can to continue it. It’s because of the skills of our Hospice at Home staff that we can carry out this work.
New responsibility Registered Nurses are autonomous practitioners now, not just nurses following doctors’ orders. This has been a significant change, and with the advent of nurse practitioners and specialist nurses, many nurses can now prescribe and do tasks that would have been traditionally only medical. Nurses are now practising as individuals and making decisions which would not have been around to make 30 years ago. And in the light of medical advances more decisions and choices are available, and therefore more decisions often need to be made.
Still caring after all these years Sue Townley, Polly Hayley, Tracey Lloyd, Maxine Armistead and Jules Bukowski all came to St John’s from St John of God hospital over 30 years ago and are still working on the ward. Sue, Polly and Tracey shared a few of their observations of what it was like working at the hospice in the early days.
In 1992, when I qualified, the Registered Nurses’ Code of Conduct comprised ten bullet points. Now it is 19 pages long. This means nurses are very highly governed and any actions which break the Code must be questioned.
Training All registered nurses now need to ‘revalidate’ every three years. This means they must meet eight specific criteria set by the Nursing and Midwifery Council, which all nurses must join when they qualify. These include practising for 450 hours, and carrying out 35 hours of continuous professional development. We are also monitored by the Care Quality Commission and this requires all our staff, including our Registered Nurses, to attend specific statutory training, as well as education for professional development. It’s a lot of time and work but it’s important that we do it. So the changes in nursing over the past 30 years have been huge and we can be certain that the context in which we deliver hospice care at St John’s will continue to change. But whatever happens, we are committed to continuing to provide the highest possible standard of palliative care, 365 days a year, to the people of North Lancashire and the South Lakes.
Sue Townley is one of the nurses who has been with us throughout all this change. She started working at St John of God Hospital in Silverdale in 1980, the year the appeal to raise money to build the hospice was launched!
Back in the 1980s, what wasn’t done on the wards by the nuns was done by the nurses. They cleaned the wards every morning and the bathrooms in the afternoons and did most things inbetween, including running to the Spar to get patients their newspapers. There was also a lot of heavy lifting before the hoists, slide sheets and adjustable beds came in. But there wasn’t all the paperwork in those days that there is today – the computerised care plans, risk assessments, and the like – and there wasn’t as much training and studying to do. They’re just as busy as they’ve always been! Under Sister Aine, all sorts of people came into the hospice regularly for a warm drink and something to eat. And they had all sorts of
volunteers, too – including prisoners from Lancaster helping out with the cleaning and in the kitchen as part of rehabilitation programmes. It was all part of the Christian ethos of the hospice, along with the short chapel service every morning before the day shift started. Because some patients came in regularly for respite care, the nurses used to have a chance to get to know them better, which is something they miss. (One patient, Septimus Wilson, who came over from St John of God on the first day, was so much of a fixture that he had his own tomato plants with him on the ward.) In those days, patients were often well enough to be taken out in wheelchairs and down to the canal for a bit of fresh air but today patients with complex conditions tend to be more dependent and unable to leave the ward for long periods.
And, most obvious of all, the uniforms are lots of different colours these days – rather than the rather unforgiving white from the little white hats down!
(L to R): Polly Hayley, Tracey Lloyd, Maxine Armistead and Jules Bukowski
My mum was in St John’s Hospice 27 years ago, it will always hold a special place in my heart.
Healing for the spirit Jules Bukowski wanted to be a healer from childhood. Her first job was working with horses and then she was head girl at a top breeding kennels and cattery before training to become a registered nurse. She came to work at St John of God Hospital in the 1980s and transferred over with the rest of the original team in December 1985.
Over the past 30 years, spiritual care services and alternative therapies have been expanded at the hospice and, as a link nurse to the Spiritual Care team, Jules believes that this is a great support to those in need. She has met some amazing people over the years and remembers how courageous and inspiring they were as they faced their illnesses. She feels that St John’s is the most caring place in the world – and we have to agree!
In-a-flash...
by Jules Bukowski He remembered In-a-flash Jules feels strongly that hospice nursing, and nursing in general, is in the tradition of Florence Nightingale and Mother Theresa – bringing love, healing, mercy and peace to people who are suffering. Outside work, she also campaigns on animal welfare, poverty, sustainability and other issues close to her heart. Being an animal lover, she has some special memories of animals at St John’s: horses (see photo!), reindeer and owls that have been brought in to visit patients and the squirrels and rabbits in the hospice grounds. Jules is bursting with creativity and has shared her poems, lyrics, illustrations and singing voice in aid of the hospice. Some of her poems were included in Lynne Alexander’s book ‘Now I can tell’ in 1990 and she has spoken and sung at hospice events and remembers particularly singing ‘Have I told you lately that I love you?’ in front of a sea of candles at a Light up a Life ceremony in the hospice grounds, best gig ever! Jules also duets with Robin, who comes into the hospice every Sunday with his guitar to entertain the patients. His wife passed away on the ward over 20 years ago and he has been visiting the ward ever since.
The horses at home Colourful plaited manes Supple leather tack Rosettes on the showground. Looks at the army of horses Pulling supplies Startled brown eyes S t are Under forlocks Hooves trudging through mud. S o rrow
sorrow
‘He’s got to go, lad’ In-a-flash...
Dr Carolyn Watt (Consultant), Dr Simon Edgecombe (Specialty Doctor), Angela Hunt, RN (Advanced Nurse Practitioner) and Dr Narinji Atheron (GP)
The Medical Team Medical care of patients in hospices has evolved since the 1960s, when Dame Cicely Saunders pioneered the treatment of terminally ill patients, recognising the need for a new medical specialism, and becoming medically trained herself. But it wasn’t until the late 1980s that palliative medicine became fully recognised with its own training programme to create Consultants in this field. Hospices have always relied on the goodwill and dedication of doctors from other specialties and St John’s was fortunate to have Professor Malcolm McIllmurray, a General Physician and Oncologist, and Dr Michael Warren and Dr Peter Nightingale, from General Practice, who were all been passionate about and devoted to the care of patients here in its earlier days. Our Visiting Consultants at present are Dr Nick Sayer and Dr Carolyn Watt. Our current in-house team is still evolving and is now ably assisted by our Advanced Nurse Practitioner, Angela Hunt. This position is a fairly recent innovation, allowing senior nurses to train in many of the skills of a doctor, and is a valuable contribution to the consistency of standards required in the running of the ward. We also have volunteer GP doctors and regular GPs in training who are learning and working at the same time. Not only do we look after in-patients on our 13-bed ward, but also our Day Hospice patients, our outpatients who come to clinic and any patients in the community who need a visit. Our connections with the local hospitals mean that we also visit there and we work with our specialist palliative care nursing teams and the general practice teams on all sites. Palliative medicine is a challenging and rigorous field so it is important that we are dedicated not only to our patients and families but Medical Director also that we work together as a Dr Philomena Swarbrick team to support one another.
Day Hospice The hospice has always offered day care services and therapy but our purpose-built Day Hospice – the Oak Centre – was opened only in November 2008, thanks to the hard fundraising work of the Friends over many years. Here doctors, nurses, healthcare assistants, social workers, occupational therapists,
physiotherapists and complementary therapists support patients and families with life-shortening conditions. We also have 17 volunteers who help every day with picking up patients and taking them home, serving refreshments, providing therapies and entertainment or just keeping people comfortable.
Amazing place. And wonderful ‘at home’ care. You are all angels xx
Housekeeping and catering Janie Kirkman remembers... When the hospice opened, there was a full-time Housekeeper in charge of laundry, cleaning and catering for a couple of months but she soon left and the nuns managed without any paid help for the next few years. Then I joined the hospice as Housekeeper in January 1990 and ended up staying for 25 years! There was a small team of about seven women who covered the hospice, with one of them running the kitchen. In 1995 the catering department split off from the rest of housekeeping, and was run by the Head Cook, as it is today. The work was heavy but, as ‘health and safety’ started to trip off our lips, over time, our equipment became more modern and lighter to handle. Buckets had to be on wheels. We got housemaids’ trolleys for carrying everything. Buckets, mops, cloths, chopping boards and knives were all colour coded for their different functions. It all helped the hospice community to stay safe and free from infection and meant the nurses could care for their patients in a clean environment. Today the hospice has five staff in catering, making great use of the hospice produce nurtured by our volunteers, and nine in housekeeping. The buildings have been extended over the years, of course, so the cleaners have a bigger job to do today, too. They mop over 71,000 square feet of floor, clean bathrooms 350 times and empty bins almost 600 times every week!
The role of the first volunteers
Left: A group of domestics take a break; Right: Cook and nurses serve lunch from the trolley
Michele Moorby (Kitchen Assistant), Danielle Redhead and Peter Thompson (Cooks)
With only one cook in the kitchen, volunteers were always essential to cover weekends and holidays. A couple who had experience of large-scale catering volunteered their services, even on Christmas Day, and other volunteers took meals round to patients, as they still do today. For the past six years volunteers have also been responsible for providing fruit and vegetables to the kitchen from the hospice gardens. Volunteers also performed a vital service in the sewing room, something which had been a necessity at St John of God Hospital in the early days and continued at the hospice. A small room was set up with a sewing machine on which a volunteer would skilfully turn worn sheets to make them useful again. Any that couldn’t be saved were turned into pillow cases. It was amazing what they managed to do!
Hospice at Home St John’s has always offered support to patients beyond the wards, whether it be through the Day Hospice or pastoral care but in 2003 we began a service escorting patients back home from the ward. It was clear there was a need for more work in this area, and we soon had an Outreach Team of four nurses, providing specialist palliative care to patients in their own homes during the daytime in every corner of our community – as far as Grasmere at the north west corner and over to Sedbergh and Settle in the east.
What we do
This service was renamed ‘Hospice at Home’ in line with similar services around the country in about 2010. In 2013 a partnership between St John’s and other community services enabled us to start to offer 24-hour care within North Lancashire. The following year we were able to secure funding to add to that our Cumbria Night Sitting Service and have since provided overnight support to nearly a hundred patients in the South Lakes.
• end of life care
We reach many more patients through the Hospice at Home service than we treat on the ward. In our first year of 24-hour care, our team of eight Registered Nurses and six Healthcare Assistants made a staggering 12,500 home visits in North Lancashire alone.
Offering symptom management as well as support and advice, the team are there to help both patients and their families when they need it most, through: • holistic nursing care and support for patients, families and carers
• personal care in addition to community services • support to avoid a crisis admission to the hospice or hospital, where possible • earlier discharge from hospital for patients who wish to be cared for at home, and • respite for carers for short periods.
We frequently receive moving messages of thanks for the support that we provide. Siobhan Newton’s eloquent description of her final weeks with her Mum gives a flavour of the difference we can make...
Siobhan Newton
Speech at Light up a Life 2013
Last October my Mum was diagnosed with pancreatic cancer. My Dad rang from the hospital, it was not a kidney infection, it was a death sentence. Less than ten minutes later my boyfriend and I were in the car and on the way. As the shock wore off and the realisation dawned that chemo was doing more harm than good we began to think about what Mum’s last weeks would be like. There were different considerations that needed balancing, including second guessing the level of care she would need, deciding what care she was comfortable with us, her family, providing for her and what support we would need to make everything work. Crucially for Mum, these all had to avoid her feeling like she was making too much fuss and maintaining her quality of life for as long as possible. Mum was certain that if at all possible she did not want to go into hospital. We went and looked around the hospice and Mum was pleased that it felt less like a hospital than she had feared. As Mum became weaker we explored the other services that the hospice could offer and the provision of regular visits and support from the Hospice at Home team exceeded anything she or Dad had hoped for. It was decided, all being well, that Mum would die at home. Being able to spend these last weeks with Mum contained challenges, but it provided many more, beautiful memorable moments – moments that proved that Mum was dying as she had lived, loving music and nature and bringing a gentle but dry sense of humour to everything. Taking her to the hairdresser a fortnight before she died we had a surreal conversation that made mum giggle all the way home. As we left the hairdresser asked if we wanted to make another appointment. ‘No,’ we said. ‘Oh, is there a problem?’ ‘Errmmm,’ said Mum, ‘well, er, I am probably going to be dead before then.’ I will always treasure the expression on her face, and the courage behind it, and the sense of an important shared moment. Mum had always loved nature. She had been an ecologist before anyone thought it was a career and got an MBE for services to conservation. The last week of February last year was a beautiful bright early spring week and it was to be the last week of Mum’s life. She spent most of it in the hospital bed in the sitting room which looked out onto her garden. Listening to her favourite music she could look out and admire the vibrant yellow of the flowering witch hazel, the endless varied visits to the bird feeders and watch the changing sunshine and weather. On the Wednesday we all bundled up and had lunch outside in the garden. We pushed her wheelchair around all the corners of the garden, looking at some of the small shoots breaking the soil, watching the heather to see whether any early bees were around and trying to help her focus on the kite wheeling high in the sky. A beautiful, peaceful, wonderful day and one that without the Hospice at Home team would not have happened. One of the wonderful things about having Mum at home was the way we could still involve her in everyday conversations. We could easily catch her in her increasingly rare waking moments. The unveiling of a new month with a new picture in the National Parks of America calendar was always a matter for comment. As the March picture, a glorious sunset over some of stunning mountains was turned, Martin said it looked like the Matterhorn. As always, faced with any question about the natural world, I went through to Mum. ‘Mum, why do the Grand Tetons look like the Matterhorn. Are they the same rock?’ Mum stirred, and opened her eyes. ‘Yes, I think they both have a lot of granite, and I think you will find it is pronounced Teetons.’ She smiled and closed her eyes again. My last conversation with my Mum, right to the end gently sharing the knowledge she had accumulated over many years of a life well lived. Another conversation that I would most assuredly not have had without the Hospice at Home team. Thank you
Visitors, volunteers and hard work recognised
L to R: Olympic torchbearers drop into the Oak Centre in 2012; Sister Callistus at one of our Summer Fayres; our original admin team Brenda Farrer and Janet Corkill; Peter Sedgwick’s display in memory of his brother-in-law John Ray; volunteers receiving the Queen’s Award for Voluntary Service in London in 2004
Royal and noble visitors: The Duchess of Norfolk at the official opening ceremony; Princess Alexandra’s visit in 1989 and the Duchess of Kent in the same year; the Duke of Gloucester arriving to open the Oak Centre in 2008
L to R: Having fun at the Christmas Fayre; Sister Aine receives her honorary degree from Princess Alexandra at Lancaster University in 1989 alongside Victoria Wood; Martyn Lewis and his wife visit patients on the wards in 1992 just before the fundraising dinner at which he was Guest of Honour; Brenda Flanagan with Mike Warren just after being presented with her British Empire Medal in the Oak Centre in 2012
Pastoral Care Spiritual care and pastoral support has always been an important part of our hospice, from the days of the Sisters of our Lady of Apostles. People are sometimes surprised to learn that, although the hospice is dedicated to St John and is proud of its Christian ethos, it is non-denominational and we welcome patients, staff and volunteers of all faiths and none. The aim of the pastoral care service is to offer confidential pastoral and spiritual support to both patients and loved ones at a time that is often difficult and challenging. Our experienced volunteers visit the Day Hospice and the In-Patient Unit every weekday and are also available to chat or pray with privately. This service is available for patients, their families and also for staff. The chapel was built with stones reclaimed from local barns and the beams which go up to the high point of the chapel are not equally spaced. It was designed this way to reflect the fact that everyone entering Heaven is different. The altar table was a gift from the company which built the hospice and is made from a variety of English woods. From whichever angle you view the table you see the sign of the cross.
Freda’s big day Muriel Jackson was one of the first nurses at the new hospice and remembers working with Sister Aine, Sister Callistus and Sister Maureen (‘just like Sister Evangelina in Call the Midwife’) very well. She was also there when the hospice held its first wedding, early in January 1986. The bride’s name was Freda and she was so thrilled to discover that she could get married, resplendent in a big white dress and a dazzling smile, and carrying a bouquet of blue and white flowers made by Muriel. Muriel’s uncle, Canon William Jackson (pictured), took regular services at the hospice at the time and it was he who presided over the ceremony and Dr Malcolm McIllmurray played the organ. Just as for any other wedding, there wasn’t a dry eye in the house. For their wedding night Freda and Tony stayed at The Post House in Lancaster. Freda’s funeral was held at the hospice later the same month. The chapel roof
In the early days, Sister Callistus held a Shalom Prayer Group in the chapel every Monday evening for any member of the local community who wished to attend, a custom continued to this day. At her request the Friends also bought an electric piano for use in the chapel. As well as regular Christian services and sacraments, we hold A Time to Remember services here four times a year, for relatives of those who have been in our care, and on the first weekend in December each year we hold Light up a Life services around the area, for anyone who would like to commemorate someone that they have loved and lost.
Continuing care and support The Bereavement Support Service offers friendly support to people known to specialist palliative care, teams in our communities, not just to those who have been bereaved at St John’s Hospice. It offers the opportunity for people to talk through the effects of their loss, with a trained individual who can listen without being personally overwhelmed. Our Bereavement Service Volunteers work on the phone and one-to-one at the hospice and also run a ‘Tea and Support’ group one Sunday a month where those who have been bereaved can share their experiences.
A tree cut down in the hospice grounds revealed an angelic image running through its core. This cross-sectional piece was kept in the chapel for several years
Shock
by Colin Stones, Patient Queuing at the bank I was feeling watched, gammy and self-conscious. I was tall. There was a lot of middle-aged housewives Standing about in their flat shoes. I felt a nudge in my back. I spun around on my heels –what’s up? This blue-rinsed lady
Lynne at her desk in the hospice
with her eyebrows on her nose and her I’m-about-to-ask-you-a-big-deepquestion face says:
Now I can tell A very important piece of hospice history took place in 1988. At the instigation of Terry McCormick, whose young son Rowan was cared for at St John’s, and Dr David Gorst, we had a Writer in Residence. Her name was Lynne Alexander. She got to know patients, relatives and staff and many of them wrote poems which were eventually published in a moving book called ‘Now I can tell’ in 1990.
‘Why does a young lad like you shave his head?’ ‘It’s not shaved, it fell out.’ She looked at me with a why-face, she didn’t say anything. Then I said, ‘I’ve got cancer.’ There were no comments, just a whole row of oh-my-god-faces.
The people at St John’s are looking after my Dad with care and compassion. He is truly at peace in his last few days.
The multi-millionpound question... There’s no doubt that St John’s Hospice and its team of very special people provide exceptional care for local folk and their loved ones. That said, access to a local hospice and its irreplaceable services are possible only because of the overwhelming generosity of our local community. It’s a common misconception that hospice funding comes principally from the NHS. Far from it. Of the £4 million it now costs to run St John’s Hospice each year, the NHS provides only £1.5 million. Every year we face the challenge of raising another £2.5 million to keep going. That’s around £50,000 each and every week. The first seeds for a hospice in Lancaster were sown in 1980, when the NHS agreed to contribute to running costs if money could be raised locally to provide the building. That initial campaign was not just successful in producing the cash to build and equip a new hospice. Thanks to a continuing strong flow of charitable income and increasing numbers of substantial legacies, the hospice balanced its books for many years to come. In 2008 and 2009 alone, legacy receipts totalled over £2 million. Meanwhile, the cost of providing increasingly specialised care had grown dramatically. Total expenditure had risen from £300,000 in the hospice’s first year to £3 million by 2010. Even after allowing for inflation, costs had increased by over four times in real terms. When legacy income fell back to lower levels, the hospice plunged into the red at the rate of half a million a year. Reserves built up during the years of plenty were due to run out within five years, by which time St John’s Hospice would be out of business. It was time to Save our Hospice. A 5-year plan was instigated to eliminate the annual deficit. The choice was simple but challenging – reduce costs or increase income. Cuts in services and staff redundancies were not palatable options and so a dedicated and highly creative fundraising team was established. Campaigns were promoted in the local press. The lottery was launched. The number of charity shops increased from three to ten. A regular programme of new events was introduced – walks and colour dashes, balls and dances, party nights, concerts, race days, golf days and many more. Supporting St John’s Hospice can be great fun. As we reach its 30th anniversary, our local hospice is back in the black one year ahead of plan. This is thanks not only to an outstanding team of staff and fundraisers but also to amazing local support. The challenge is never over, however. We still need that extra £50,000 a week to keep going forward.
Robert Meacock Trustee and Finance Committee Chair
The St John’s Hospice team for Born Survivor in the Lake District in 2015
Fundraising
Fundraising hasn’t changed that much over the past 30 years, still relying on the generosity of the local community, including the support and partnership of local businesses as well as individuals and organisations such as schools. We still celebrate June with sunflowers and continue to hold our traditional summer and Christmas fairs. But today we also have an array of new events which are all enthusiastically supported year after year. We cannot thank our supporters enough. Without their tireless enthusiasm, from the launch of the first appeal in 1980 through to 2016 and beyond, we simply wouldn’t be here.
The Friends of St John’s Hospice When the hospice opened the four original support groups came together to form the Friends of St John’s Hospice, a registered charity, and continue their fundraising. For the first 18 months income was put towards building costs but once the building was fully paid for the Friends started to fund items of equipment at the request of Sister Aine and Sister Callistus, as well as paying for: • a proper reception desk in the foyer • a new extension • refurbishment of the Day Room • resurfacing the ward corridor, improvements to the hospice.
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To raise money, they organised all sorts of events, in the community and at the hospice, some of which became regular fixtures in the local calendar, including: • the Summer and Christmas Fairs • street and in-store collections • the annual Sunflower Week Appeal • Voices for Hospices • Light up a Life remembrance services • Songs of Praise with the Kirkby Lonsdale Brass Band • the Centralairs Christmas Concert, and • the monthly Friday coffee mornings (still very well attended).
The 1st Sunflower Appeal (L to R) Veronica Carter, Jean Lawrence, Matron Susie Roth and Brenda Flanagan
The Friends charitable trust was officially disbanded in 1999, after the appointment of an in-house Public Affairs Coordinator, making a final and significant donation towards the cost of the new Garden Room, but many of the local groups have continued to raise money.
Above and background of facing page: Kendal Colour Dash 2016
The Garstang Friends Garstang Friends of St John’s Hospice is one of the many local groups which has continued to raise money for the hospice, despite the formal disbanding of the central trust in 1999. Longstanding members Audrey Tetlow and Jean Helme, and relative newbie Gillian Benn, shared some of their memories. Audrey Tetlow was the original Chair of the Friends of St John’s Hospice group in Garstang and set it up after a chance conversation with Dr Malcolm McIllmurray in hospital. She had never done anything like it before but asked her neighbours round for coffee and got advice and soon had a good group going. Jean Helme joined the group soon after. Mrs Benn, Gillian’s Mum, represented the Garstang group on the Friends committee at the hospice. They held coffee mornings, street collections and garden parties regularly. One time they had rather too many people squeezed into someone’s house for a fair and the local paper had the headline ‘games and sports in bedrooms’ because the party, and the games, spread out all over the house. After that they moved to the URC hall, which was leant to them free of rental or heating or any other charges regularly from then on. They did things properly with tickets, stalls and posters after that! On one occasion they offered to do the refreshments at a local farm sale, in aid of the hospice, but it bucketed down and turnout was low. Several garden parties took place at Marcus Worthington’s home in Dolphinholme. They had a twice-yearly stall outside Garstang indoor market for bric-abrac and secondhand books and a book stall at the main hospice fairs.
Over the years local schoolchildren have played an important role in supporting the work of the hospice and continue to do so today, taking part in walks, fun runs and all sorts of sponsored activities.
Lovely caring staff that make the hardest of times that little bit easier. Selfless and wonderful!
They were the first group to have the official St John’s tabards for their street collection and it made a huge difference to their impact (as well as keeping them warm). A bus stopped in the centre of town and the driver got out to give them a contribution because he had known an in-patient. One of their greatest supporters was Mrs Elizabeth Rowe. She baked, jammed, knitted, sewed, scrounged things for sale and always had a stall (and a half) strategically positioned at any fair. She got an MBE in 2002 at the age of 81 for services to charity and used to say: ‘I hope the Lord grants me a few more years to do work for the hospice.’ Most wellknown for her excellent jam-making, she produced between 60 and 80lbs a week to sell in charity shops and at other fundraising events. Three years’ fundraising by the Garstang Friends refurbished the Family Room at the hospice and money was often raised for particular items, such as new beds, chairs, crockery – from a list suggested by the hospice but then chosen by the Friends (with much discussion). Today the group has dwindled somewhat but Mrs Benn’s daughter, Gillian, has been involved since she retired six years ago, along with a dozen or so recent retirees. They still have coffee mornings, street and instore collections and one-off special events. Members have taken part in the Moonlight Walk and, more recently, the Welly Walk along the new Heysham/Morecambe bypass. They’re good for a few years yet! Mrs Elizabeth Rowe cuts the ribbon at the opening of the Garstang hospice furniture shop, with Audrey Tetlow (left) and Jean Helme (right) holding it steady.
Shops St John’s Hospice is the proud owner of ten shops in the Lancaster, Morecambe, Garstang and Kendal areas. The first three – in Pedder Street, Morecambe, Church Street, Lancaster and at Lancaster University – were opened back in the 1990s and have been supporting our work for a long time, but we have opened seven shops since 2010. They now raise over £300,000 a year and also allow us to have a strong presence in the community and away from the hospice buildings. Our shops are mainly staffed by volunteers which means that much-needed income is directed back to the services that the hospice provides. Volunteers also work in our warehouse sorting donations, recycling and delivering and collecting furniture for the furniture shops.
Volunteering Brenda Flanagan BEM remembers... A few months before the hospice was due to open, I visited Sister Aine and Sister Callistus in Silverdale to discuss with them the establishment and development of a volunteer programme for St John’s Hospice. Although they had a few volunteers at St John of God in Silverdale it was on a casual basis. They readily accepted my offer of help. I was already doing this work in a professional capacity in the local hospitals but my work for the hospice was on a voluntary basis.
Today, St John’s has 470 regular volunteers – 158 working in our shops and 312 within the hospice. There are about 25 different roles: anything from cleaning the fish tanks to acting as Transport Coordinator. Our largest areas are Reception, with 58 volunteers covering 21 shifts per week every day of the year, and the Ward where we have 70 volunteers covering 35 shifts a week. Three of our super-volunteers have been doing shifts on Reception (among other things) for us since our doors opened in 1986. In the early days the only staff on Reception were volunteers but, after lots of lobbying and fundraising by Jean in the early 1990s, a new reception area and switchboard were installed and paid reception staff were taken on, to work alongside the volunteers.
A few days before the hospice opened the Support Groups organised a flower festival. This was to give members of the local community an opportunity to visit the hospice to see what their fundraising efforts had helped to achieve. During the festival I invited people to add their names to a list if they were interested in becoming a volunteer. We soon had more than a hundred names. From the very beginning, volunteers were involved in all aspects of hospice work and as I had a full-time job my time was limited. As their numbers and areas of work increased, Jean Lawrence, who joined the Friends of St John’s Hospice in 1988 and soon became their Secretary, assisted me in this work. Jean was then appointed in March 1991 as the first paid Voluntary Services Organiser, part-time to begin with but full-time by the time she retired 12 years later.
In 2015 we recruited a whole new group of volunteers for two new projects – Neighbours’ Network and Clinical Volunteers – as well as expanding some of our other Ward roles. Over half our volunteers are over 65 (a mandatory ‘retirement’ age of 85 was introduced in the early years!), but we do have some younger volunteers who tend to have to move on quickly because of changing circumstances. We get about five applications a week to volunteer with us but there is always plenty of work to do – and we couldn’t operate without them!
Flower arranging From the earliest days, there have always been lots of flowers in the hospice and volunteer flower arrangers played a major role in keeping them looking fresh and beautifully displayed. There used to be a flower bay on the ward from which they worked.
Volunteers present a special flower arrangement for our 10th anniversary to Jean Lawrence and Matron Susie Roth
Looking after our veg garden The vegetable garden group was set up in late 2010 by long-standing hospice supporters and volunteers Margaret Ellor, John Wilson, John Watson, Dorothy Newby and Denise Copson. Prior to that, the grassy hill at the rear of the hospice had contained just one raised bed in which a few volunteers grew some vegetables on a regular basis. In early 2011, two more raised beds were built. This was the start of the hospice vegetable garden as we know it today.
Left: Leslie Crowther with Jeanne Fletcher after receiving a special commendation in the Hospice Carer of the Year awards at the London Hilton; Right: Volunteer June Williams at the hospice
Since then the garden has been extended, the grass removed and 27 beds of various sizes have been constructed, together with a corner filled with fruit bushes, an avenue of fruit trees, and a row of bays for compost and leaf mould. Essential garden furniture has been constructed from recycled material and generous donors have provided tools, a greenhouse, a garden shed, a netted tunnel and a flagged pathway. The garden is estimated to have saved the hospice over ÂŁ2000 in food bills. Its construction and operations since the raised beds were built have not cost the hospice a penny.
Top: Volunteers say goodbye to Sister Aine in 1994; Middle: At the Lancaster District Volunteer Achievement Awards in 2006; Staff from Barclays taking a break from a shift in the garden
Helping on the wards
Our Trustees
When the hospice first opened its doors there were two wards – Westmorland and Sefton – with a total of 28 beds. Volunteers who were registered nurses worked alongside hospice nurses. They wore the same white uniforms and were allowed to carry out nursing duties other than dispensing drugs. As funding increased, the volunteer nurses were phased out but Clinical Volunteers are now being reintroduced to help us provide the best care possible.
L to R: Some members of the first Board of Trustees (L to R) Bill Forgeham, Chairman Tony Mason-Hornby, Mrs Lucy Parker and Dr Malcolm McIllmurray
Any charity has to have a Board of Trustees, and at St John’s we have two – one for the Hospice itself and one for St John’s Hospice Shops Ltd, which is a subsidiary of the main charity.
On the ward today, we have an excellent reputation for the care we are able to give, but it is the presence of our large number of volunteers that enables us to provide the ‘gold standard’ because they add an additional element, either because they have the empathy and experience or simply that they want to be there. Day care has also always benefited from our volunteers. In the early days, the large day room accommodated day care services with an area for therapy activities. A retired Occupational Therapist was recruited to work with a small group of people who were in long-term remission and she was assisted by two other volunteers. It was only later that Day Care became a nursing service with voluntary support.
Volunteers on the till at our hospice shop in Bare
Both Boards are made up of volunteers with a broad mix of skills, experience and attributes to lead the efficient and effective governance of our operations. Our Trustees have the knowledge, experience, aptitude and commitment to help ensure that the hospice remains an integral part of our community for many years to come providing excellent palliative care to those who need it. Some have been involved with the hospice for a long time... When Mike was a GP in Milnthorpe, his practice looked after St John of God nursing home in Silverdale. In the early 1970s, Mike was asked to admit a patient with advanced cancer for whom no further treatment was possible. He did and so began the work which we continue today. Mike was our Medical Officer for nine years after the new building opened, and has been a Trustee ever since, also serving as Chairman from 2001 to 2009.
Mike Warren
Ahmadiya Muslim Youth Association donating a batch of Christmas jumpers for patients and staff
Into the future The 30 year anniversary of the opening of St John’s Hospice is a time to look back at all that has been achieved, to be thankful to our founders for their foresight and determination to build and create this wonderful service in our community, and to thank all the many staff and volunteers, past and present, for their energy and dedication. But it is also a time to look forward to the next 30 years. In recent years the hospice has been under a lot of financial pressure, but thanks to the business and financial expertise of the staff and Trustee board, and to the hospice’s wonderful dedicated fundraising team, the financial position, while still requiring a huge effort every year, now looks much better. I think we can go forward with optimism to the future. We rely upon the NHS for about one-third of our income and hope the NHS will continue to see the value of the services we provide. Thankfully, among all the financial, political and social changes of the past 30 years, the one amazing constant has been, and remains, the support of our wonderful community. We thank them all for this support. Together we will ensure the hospice is safe and here to serve the community for the next 30 years. So what will the future bring? If we knew, life would be much easier. What we do know is that we are committed to providing a person-centred service to anyone in the local community requiring our care. That will continue. It is likely we will increase the scope of the community-oriented Hospice at Home service. But those patients with very complex needs who need our care can be assured that it will always be available. Everyone deserves to have the benefit of the end-of-life-care (EOLC) skills provided by the hospice. We intend to offer education in our skills to our professional colleagues so that more patients will benefit. And we will work with local people to develop ‘compassionate communities’ in which everyone can genuinely feel a part. The future is positive. It will see more collaboration rather than competition between hospices in order to share resources and skills, and more collaboration with the NHS to provide the best possible care for patients.
Chris Heginbotham Chair of the Board of Trustees
You can dedicate a light on one of our trees in memory of a loved one as part of our Light up a Life appeal which launches in October 2016.